Current Status of Integrated Palliative Care Among Parkinson Foundation Centers of Excellence in the United States.

Background And Objectives: To assess the current structures, knowledge, and readiness to integrate palliative care (PC) into Parkinson disease (PD) care at Parkinson's Foundation Centers of Excellence (COE) in the United States.

Methods: Three unique surveys were administered to health care professionals/staff at COEs to assess PC (1) resources, (2) knowledge and comfort, (3) clinical experience and processes, (4) barriers, and (5) readiness for implementation.

Results: Response rates for the 3 surveys were 97%, 98%, and 56%.

Does a novel community-based outpatient palliative care intervention for Parkinson's disease and related disorders improve care? Qualitative results from patients and care partners.

Background: Palliative care has the potential to address significant unmet needs in people with Parkinson's disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability.

Aim: To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson's disease.

Design: Qualitative study embedded in a randomized clinical trial to document participant experiences with a novel palliative care intervention (community neurologist training and remote team-based specialist palliative care).

Parkinson disease patients' and carepartners' perceptions of palliative care.

Introduction: Outpatient palliative care offers an opportunity to improve the quality of life of Parkinson's disease (PD) patients and families. While there are efforts to improve clinicians' palliative care knowledge and skills, there is limited knowledge on patients and carepartners' knowledge and perceptions of palliative care. As part of a larger study on implementing outpatient palliative care, this study aimed to understand patients' and carepartners' knowledge and perceptions of palliative care, and their palliative care needs and preferences prior to the implementation.

Patient and Family Outcomes of Community Neurologist Palliative Education and Telehealth Support in Parkinson Disease.

Importance: Parkinson disease and related disorders (PDRD) are the fastest growing neurodegenerative illness in terms of prevalence and mortality. As evidence builds to support palliative care (PC) for PDRD, studies are needed to guide implementation.

Objective: To determine whether PC training for neurologists and remote access to a PC team improves outcomes in patients with PDRD in community settings.

Reach of Palliative Care for Parkinson Disease: Results From a Large National Survey of Patients and Care Partners.

Background And Objectives: People with Parkinson disease (PWP) and their care partners have high palliative care needs resulting from disabling motor and nonmotor symptoms. There is growing support for palliative care (PC) approaches to Parkinson disease. However, little is known regarding the extent to which the palliative needs of PWP and care partners are currently being met.

Between a Rock and a Hard Place: The Challenges of Caregiving During a Pandemic for Parkinson's Family Care Partners.

: To understand Parkinson's Disease (PD) care partners' a) challenges that led to worsening strain and b) their suggestions for supports to help them during the ongoing pandemic. : Using a qualitative descriptive design, semi-structured interviews with family care partners (n 19) were completed. Participants were recruited from 10 sites across the United States that varied in size, demographics of patient population served, and geographic location (urban, suburban, rural).

Experience of Community Neurologists Providing Care for Patients With Neurodegenerative Illness During the COVID-19 Pandemic.

Objective: Health care delivery systems transformed rapidly at the beginning of the coronavirus disease 2019 (COVID-19) pandemic to slow the spread of the virus while identifying novel methods for providing care. In many ways, the pandemic affected both persons with neurologic illness and neurologists. This study describes the perspectives and experiences of community neurologists providing care for patients with neurodegenerative illnesses during the COVID-19 pandemic.

Lessons from the COVID-19 pandemic for improving outpatient neuropalliative care: A qualitative study of patient and caregiver perspectives.

Background: COVID-19 has impacted persons with serious illness, including those with chronic, neurodegenerative conditions. While there are several reports on COVID-19's impact on inpatient palliative care, literature is limited about the impact on outpatient care which may be more relevant for these patients.

Aim: To generate a person-centered description of the impact of COVID-19 from the perspectives of patients living with neurodegenerative disease and caregivers to improve outpatient palliative care delivery.